By Aisling Burnand, Chief Executive, AMRC 

Published: 22 May 2018

It’s not every day that the Prime Minister makes a speech with science and medical research at its centre. It’s also not every day that I’m invited onto the Today programme to discuss how patient data, in combination with innovative AI technologies, could revolutionise healthcare – an opportunity that AMRC’s medical research charity members are very much alive to. Yesterday was that day.

The PM’s mission to revolutionise healthcare using AI

In her speech yesterday, the PM outlined the first mission for the AI and Data Industrial Strategy Grand Challenge. She set out the government’s ambition to lead a world-wide revolution in healthcare by using Artificial Intelligence (AI) to transforming the prevention, early diagnosis and treatment of diseases like cancer, diabetes, heart disease and dementia by 2030.

In cancer particularly, the Government’s focus is that within 15 years we will be able to diagnose at a much earlier stage the lung, bowel, prostate or ovarian cancer of at least 50,000 more people a year. Combined with the great treatment and care provided by our NHS, that will mean every year 22,000 fewer people will die within five years of their diagnosis compared to today.

These are significant and welcome ambitions which echo those of many medical research charities. Crucially, they are underpinned by the use of patient data.

Responsible use of patient data must underpin the development of AI technologies

Currently, we are very much in the foothills of the application of AI technology. It has huge potential to transform the lives of patients when combined with the rich datasets held within the NHS, but only if technologies are introduced in a way that people can trust.

Now, more than ever, it’s vital to have better conversations with the public to explain how data is kept safe to build confidence and trust. At the end of this week data protection legislation is being strengthened with the introduction of the General Data Protection Regulation (GDPR) and patients are soon to be offered a new choice about how their NHS data is used.

Patients want to share their data for public benefit

A recent Healthwatch survey regarding data shared by the NHS found that most people would be happy for the NHS to use confidential patient information to improve the healthcare treatment of others. It also found that people are more supportive of their data being used if there is a public benefit.

Most patients believe the benefits of data sharing outweigh the risks. AMRC’s members have some striking examples that illustrate this. A recent survey from the Brain Tumour Charity found that 97% of patients would consent to sharing their data, even if it meant they could be personally identifiable. The Cystic Fibrosis Trust’s registry includes information from 99% of people in the UK with cystic fibrosis who are contributing their data for research. These are staggering figures that show the willingness of patients to share their data responsibly.

Action must be taken now - failure to share data puts patients and medical research at risk

Failure to record, link and share data in the NHS is jeopardising the care and safety of patients as well as our ability to conduct world-class research. Progress on creating a truly digital and 21st century NHS has been far too slow and patient care and research has suffered as a result of this.

Examples are all too common. One of AMRC’s members, Asthma UK, has shared the particularly powerful case of 13-year-old Tamara Mills who died from an asthma attack in 2015 despite seeing GPs and attending hospital 47 times in the four years leading up to her death. Each time she saw healthcare professionals, they treated the immediate problem as an isolated event and did not link up her multiple appointments and admissions.

Medical research charities are harnessing the power of data and exploring AI to improve patient outcomes

Two of AMRC’s members, Parkinson’s UK and The Cure Parkinson’s Trust, are working with the tech company BenevolentAI to identify new treatments for Parkinson’s. Using AI, they aim to identify at least three currently available medicines that can be repurposed to address Parkinson’s as well as two brand new ways to treat the disease by identifying novel drug targets. If successful, this would mark a significant advance in the number of options and targets available for Parkinson’s research.

Another member, Arthritis Research UK, is using AI to improve patient care. They have developed an AI chatbot that can provide tailored information and advice to patients. Named ‘Arthy’, the chatbot is an IBM Watson-powered virtual assistant that can interact with website visitors in a form that feels like a natural conversation.

The future of AI in health is about patient choice

All organisations using patient data for research and patient care need to be open and transparent and talk about the risks as well as the benefits. Ultimately the future of AI in health is about patient choice. If people don’t believe the benefits outweigh the risks they will withhold their data.

Medical research has a good track record of dealing with controversial issues – examples like stem cell research and mitochondrial donation come to mind - and putting in place the best ethical frameworks so that patients benefit and risks are managed. Public engagement has underpinned the success in gaining public approval.

We must increase the public dialogue and boost understanding if we are to truly realise the benefits of AI for patients as the Prime Minister set out yesterday.

The PM must harness the assets within the medical research charity sector to achieve her ambitions

If the Prime Minister is serious about realising the ambitions that she set out yesterday, it is vital that she makes sure that the government harnesses all the assets at their disposal. Medical research charities have key roles to play – providing funding, catalysing collaborations, brokering key partnerships and, of course, providing access to patient data. It is only by working in collaboration – with patients at heart – that these ambitions will be achieved.